Loryanne’s Story
My name is Loryanne Bessette and I am a 23-year-old student at Queen’s University. I grew up in a military family and was lucky enough to move to Kingston and learn English during my early teenage years. I have always been extremely outgoing, I love sports and hanging out with friends. Coming from a family of three girls, I have always been competitive. As a kid, my parents would often describe me as being a daydreamer and a bit spacey, which funny enough, would be a key sign in my diagnosis in the future.
My epilepsy journey started in grade 9 when I was first diagnosed with temporal lobe epilepsy. Prior to this date, I had what my family doctor referred to as “fainting spells”, where I would wake up on the floor confused and disoriented. Unfortunately, these “fainting spells” would occur when I was alone and the doctors would attribute them to growing or missing breakfast in the morning. At the age of 14, during a cheerleading practice, I had one of these “fainting spells” while executing a stunt, where my teammates were able to witness the effects. My parents were called and I went home without thinking much of it. Later that night, my parents noticed abnormal patterns in my behaviour. During supper, I repeatedly blanked out and had forgotten various key events which had taken place earlier that week.
My father took me to the emergency room where, in a sense, I was lucky enough to have one of these episodes in front of the doctor. That same night, I was admitted to the children’s inpatient unit for what would feel like the longest week of my life. I underwent rigorous testing, from blood work to MRIs to 1-hour and 48-hour EEGs. The diagnosis was different from anything I had ever experienced. At this point, I was old enough to know there was something wrong with me, but apparently not old enough for the neurologist to speak to me directly. I would sit patiently on my hospital bed, waiting, while just outside the door my parents discussed with the specialists what was happening in my own brain. At the end of the week, I was diagnosed with temporal lobe epilepsy resulting in multiple absence seizures a day. I learned that there is no cure for epilepsy and that there are multiple things I could no longer do, including driving.
My seizure during this cheerleading practice was the most significant one. It greatly affected my memory and I took multiple months to recover from it. When I returned to school, all anyone would talk about was my incident. To my friends and teachers, my new diagnosis defined who I was and I felt beyond alienated. My friends made it clear that they were no longer comfortable hanging out alone with me for fear that I could have a seizure. This is when my parents and I decided it would be best to switch schools, and I intentionally made the decision to keep my diagnosis a secret. During my first year of university, I was taken off medication in hope that I had outgrown my epilepsy. My driver’s license was once again revoked, and I transitioned to adult neurology. Unfortunately, during the end of my third year of university, I was admitted to KGH for a 48-hour EEG where it was discovered that I was exhibiting abnormal brain waves and I was put back on epilepsy medication.
Epilepsy does not only come with a diagnosis but with so much more. There’s a large stigma surrounding epilepsy and negative stereotypes based on misconceptions. Although I am working towards being comfortable with my diagnosis, these stigmas still make me feel ashamed and fearful of rejection from others. To date I avoid certain social situations and hide my condition from friends. On the daily, not only am I worried about the possibility of having a seizure and dealing with the side effects of my medication, but I live with fear of SUDEP (Sudden Unexpected Death in Epilepsy).
However, this year I also learned that I am so much more than my epilepsy. I’ve achieved multiple things which, when first diagnosed, no one believed I could achieve. I have the most amazing support system, from my mom pulling EEG glue out of my hair and spending every minute in the hospital with me, to my dad downloading endless amounts of movies to keep me entertained and bringing us supper every night, to my sisters visiting me every minute they could, to my five beautiful housemates always supporting me at my student home and finally to my wonderful best friend checking in on me every morning. They made me realize that I can achieve so much and that epilepsy is nothing to be ashamed of. They have been my biggest support not only over the past few years, but especially recently when learning about my plan to share my story and fundraise for epilepsy. Anytime now, my beautiful niece will be born and I want to show her that you are so much more than your diagnosis, and that people with epilepsy can be successful. Epilepsy affects my life daily in various ways but never stops me from succeeding in everything I set my mind to. I am now a 23-year-old in university, I am applying for a master’s program, I have my driver’s license, I was able to travel to Central America and am now training for an ultra-run. Despite my diagnosis, I am confident that my time on earth will be fulfilling and meaningful.
On August 14th 2021, I will be running 100 km in 24 hours for the 1 in 100 Canadians diagnosed with epilepsy. I will fundraise money to help fund research for a cure, and share my story in hope of abolish the stigma and raise awareness for epilepsy.
Thank you for taking the time to read my story. I hope it will inspire others around me to share their own stories and remind everyone the importance of supporting people with epilepsy. You are not alone.
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